When Joe was a child, his parents contacted our charity for information and support via the Retina UK Helpline. As a young adult, he first came across us at an event in London, which was also the first time he’d met someone else with his condition.
His first volunteering task for the charity was providing feedback on the Unlock Genetics project to ensure the written information was accessible and easy to understand. This type of informal volunteering is a great way to provide a ‘lived experience’ perspective, without having to commit to a regular role. Find out more about the Retina UK Panel.
Joe moved on to a more formal volunteering role on the Retina UK Helpline and attended his first Volunteer Training Weekend in 2022, which he describes as “intense”.
““I’ve done a few volunteer telephone shifts but it made such a difference to actually meet the people who were also on the shifts with me. I had a lot of fun and really enjoyed chatting and laughing with them.”
"It made me feel part of something. The warmth and energy of the group was quite something. There’s a huge sense of solidarity and shared vision and purpose.”
He said: “They are a very warm and welcoming group of people who are all facing in the same direction when it comes to what they believe should be happening in terms of supporting people with a retinal dystrophy.
“I feel really well supported by Retina UK. It’s clear that the whole team are there if I have questions or need help. The training materials are comprehensive and very easy to access and understand. I am looking into perhaps becoming a volunteer on the Retina UK Discover Wellbeing assisted journey in the future. I’m very passionate about that project. Emotional and mental wellbeing resources are just as important as research into treatments and cures, in my view, because they help us live well in the present.”
If you are interested in becoming a Retina UK Volunteer we would love to hear from you. Visit our Volunteering pages or email us on volunteering@RetinaUK.org.uk or call our office on 01280 821334.